Childhood Cancer

Rhabdomyosarcoma

Rhabdomyosarcoma (RMS) is a cancer that develops from the cells that normally develop into skeletal muscles. RMS commonly occurs in the head and neck, urinary and reproductive organs, arms and legs or chest and abdomen. There are several types of RMS including: embryonal rhabdomyosarcoma, alveolar rhabdomyosarcoma, anaplastic rhabdomyosarcoma and undifferentiated sarcoma. 

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Latest Rhabdomyosarcoma grants

Alejandro Sweet-Cordero, MD & Maximillian Diehn, MD/PhD (Stanford University), Principal Investigator
The Regents of the University of California San Francisco
Innovation Grants, Awarded 2016
David Largaespada, PhD, Principal Investigator
University of Minnesota
Innovation Grants, Awarded 2016
Neetu Gupta, PhD & Peter Anderson, MD, Principal Investigator
The Cleveland Clinic Foundation
Innovation Grants, Awarded 2016

Latest Rhabdomyosarcoma blog posts

November 21, 2017

by Megan Roberts, Hero Mom

For some of us, gratitude is as true and as easy as the color of our eyes; for others, like me, gratitude takes work. Daily, sometimes hourly, often moment-to-moment work. And it starts by being present.

My oldest son Declan was diagnosed with cancer when he was just 3 years and 7 months old. I was also mother to Brendan, a toddler, and I was seven months pregnant with my third son, Tommy. A childhood cancer diagnosis could not have been a bigger surprise--or shock. I was prepared for having my hands full with three busy, healthy boys. But my oldest with cancer? A diagnosis I could hardly pronounce and needed Google to help me spell? How was I going to handle this?

At first, my husband, Bill, and I chose to keep the specific diagnosis, primary CNS rhabdomyosarcoma, from our family and friends because we knew from our own internet searches that the news was not often hopeful.  We wanted to direct the way people responded to Declan’s diagnosis because he needed only focused, positive, hopeful thoughts reflected back on him. So we chose to limit the information we shared about the diagnosis itself, and instead shared information about how GOOD Declan was feeling and how GOOD it was when we were all home together. We remained present in Declan’s goodness.

Then, Declan took over and he showed us how to be both present and grateful.

The name Declan is of Irish origin and it means ‘full of goodness.’ I learned quickly that Declan and his infinite goodness would direct us through his cancer journey. His curiosity about everything kept him engaged with his oncology nurses, even when the regular needle pokes made him cry. His playful spirit got him up and out of bed quickly after each brain surgery and kept him active and busy throughout his chemo treatments. His joy and his grace were boundless. 

Make no mistake: childhood cancer brings its burdens. If we hadn’t followed Declan’s lead, we would have seen his diagnosis as only a burden. But when we focused on Declan’s curiosity, spirit and joy, it became our own. It fueled our family. Being together was the best medicine for Declan, and when we were together, there was no burden. We rejoiced in each new day together. We graciously accepted each prayer, gift and meal delivered to our hearts and our doorstep. We remained present and we were grateful.

Declan died one year after he was diagnosed. And I will tell you, it felt like the light and the spirit of our family died with him. For a long time, it was really hard to find, feel and express gratitude. It was harder still to be present. 

This past October, I attended my first bereavement retreat. It was so wonderful; I didn’t want the weekend to end. Six and half years after Declan’s diagnosis and five and half years after his passing, I found my community of deepest comfort. I could be myself, in both grief and joy.  

No one stared, no one wondered, no one whispered. Not when I cried and not when I laughed. And that was the freedom that I was most grateful for: to share laughter--tears rolling down the cheeks laughter with the same people I grieved with just moments earlier. No judgment. Pure freedom to just be. My heart felt so good.

Cancer can bring profound hardships and burdens onto a family. No two families receive or carry their child’s diagnosis in the same way. And each family has their own experiences with gratitude. For our family, I am grateful for the grace that came to us with cancer. And it is grace that continues to bring peace to our hearts.

Sometimes gratitude whispers, and you have to push hard against the fear just to touch it. And sometimes gratitude swells so big and so deep inside that it lights up your face and falls out in a mass of tears. However gratitude comes to you today, know that you have the grace in your heart to feel it. 

A peaceful, happy Thanksgiving to you.

Megan Roberts is the mom to Declan, Brendan and Tommy and wife to Bill. The Roberts Family are active Hero Ambassadors for ALSF. Megan uses her unique experience to connect with other families, trying to bring grace during hard times. Read more about Declan's goodness here.

July 14, 2016

At Alex’s Lemonade Stand Foundation, we are all about kids helping kids

Childhood cancer hero, Ishani Sathianathan drew this amazing picture of her front yard lemonade stand. Ishani is a survivor of Stage 3 alveolar rhabdomyosarcoma, the most common soft tissue cancer in children. She is also a long-time ALSF stand host! This summer, join kids like Ishani and host a front yard lemonade stand. Share Ishani’s picture and invite other families to join in the lemonade fun as well!

Ready to host? 
Sign up today!

And don’t forget to share your pictures with us on Facebook, Twitter and Instagram

About Monthly Shareables:
You can help Alex's Lemonade Stand Foundation raise awareness of the need for childhood cancer research and cures for all children! Each month, we will share a new "shareable," an image for you to share with your social media network. Every time we start a conversation about childhood cancer, we bring ourselves closer to cures.

How To Share:
Sharing is easy! Links to the shareable on Facebook and Twitter are on the tabs below. Simply click on each tab and share, like and favorite! Thank you for helping ALSF fund innovative, cutting-edge childhood cancer research.